About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Friday, August 31, 2012

Greetings Everyone! Hoping y'all are planning something special for the long weekend! I had a little setback yesterday, so I stayed home from work. Woke up @ 2am because I could feel the inside of my mouth was filling up with blood - ugh! Rushed to the bathroom sink to spit out blood clots and was able to control it within a few minutes. Slept w/my mouth packed in gauze - so disappointing! With as much alcohol as Dr. Yakes used, I really hoped I would be having a major turnaround and could finally rest from having these bleeds! Of course when I removed the gauze and brushed my teeth in the morning, I had a little more bleeding, so I decided to stay home from work. Just did not want to have to deal with having an episode @ work!My sister Celia and her son (my gorgeous nephew) Mark came by to see me and brought me lunch! They are so generous with their time, love and support in every way and we are so grateful! My brother-in-law Greg will be celebrating his birthday Sept. 1st - he is the rock in our family! My father-in-law George celebrates his birthday a few days later too! Mark will be traveling to see his parents soon as they celebrate 60 years of marriage! Wow! Such role models in so many ways - very blessed to have their strong foundation in our lives!I continue my IV antibiotics, since that pseudomonous infection had reached the bone and is hard to get rid of. Got a call from one of Dr. Yakes P.A.'s yesterday, checking up on my recovery. I am amazed that I have no pain and minimal swelling! Anxious to get to work today and function normally - let's pray the bleeding goes away! Thank you all for keeping my spirits up - I was telling the P.A. how awesome I think everyone @ Swedish is as well! Have a safe, happy weekend!! I'm hoping to clean house and enjoy Hanz and Bella! Ciao!Cyndi

Monday, August 27, 2012

Hi again! It's me wanting to add a little more to what I just went through. Returned to work today - so happy to not be in pain, bleeding or too much swelling! Can't help but feel wary of still having a spontaneous bleed - all I can do is pray for the best! My family, friends and co-workers are awesome and are always there for me! I especially want to thank Shalon Whitgob - a fellow avm-er, that has given me so much hope in knowing that there is an end to this horrible curse of an avm! It is a complicated abnormality that I don't think people quite grasp the severity of! I have learned so much along the way - dealing with pain and obstacles sometimes too much to handle! I wanted to make sure some of you got to see some of the photos of Shalon's Journey as well - you can get to her site from mine! She also has an amazing husband and family/friends for a support system! I can't emphasize enough what a big part all of you play in my life. Just knowing your thoughts and prayer are with us, as we manage to do the best we can during this time! I look forward to this being over one day and would love to continue my life, as sometimes it feels like I'm on hold! Can't travel for pleasure or do too too much w/some of my limitations - but doing pretty well overall right now!

Saturday, August 25, 2012

Hi everyone! I'm going to backpeddle here a bit and include some photos that should have been in my June blog, but didn't make it @ the time! During that visit, I had an appt. w/an ENT to check my airpassages before having an emboloization. Not fun having a hose up the nose! Not painful, but uncomfortable. All clear! Then we arrived @ Swedish and hadn't been there very long when I started having a bleed! You can see Kelly (one of Dr. Yakes P.A.'s has her hair in a ponytail) and her face covered by her hands. She hadn't seen me have a bleed and had asked how I could tell where it was coming from - good question! The nurses rushed in and brought me gauze to pack my mouth! The nurse in the blue scrubs is Jill (hair back) and my Twilight buddy! I kept asking for her this trip and finally got to see her right before we left Swedish!

Ok, so now lets get to the present embolization trip! Mark went with me and I really enjoyed spending quality time together! I had my Nook as usual, and had taken the paperback The Hobbit that Mark ended up reading again as we prepare for the movie to come out! Had a good flight, but by the time we arrived and got our car rental, I missed my scheduled ENT appt.! Next time we'll leave Corpus Christi earlier! Got admitted through Dr. Yakes office, and then since we hadn't had lunch, we got permission to go out and by the time we were due back, my room would be ready! I left it up to Mark to pick a place and he decided on The Cheesecake Factory @ Park Meadows Mall! I was busy looking over the menu for something soft to eat, when Mark heard a guy asking someone sitting in the booth behind us for an autograph. So Mark tells me it's Olympic gold medalist Missy Franklin and I asked, "are you sure"? I'd hate for him to bother someone and it not be her! I handed him my phone and it was Missy and it might have been her little brother that took this photo! She had another girl w/her too. She is tall - 6'1"! We didn't realize until later that Mark was wearing a t-shirt that said TEAM USA and had the Olympic rings on it!

Headed back to Swedish - lots of familiar nurses @ the station ... Dave, Becky, and saw the new tech Alex again! Mark stayed with me in the hospital - big room w/a twin size couch-bed thing for him to sleep on. Got taken to OR the next morning and Mark of course followed my transport over there. Wouldn't you know I started hacking and had a bleed right before moving from the bed I was on to the operating table? UGH! I wasn't familiar w/the anesthesiologist or nurse on schedule - I usually have Quinn or Wendy for anesthesia, but luckily one of the male nurses that is usually there did come over and say hello! Everyone is awesome there, so I know I'm in good hands. As I lay back w/my mouth packed in gauze I asked them to not let me choke on the bleeding please!

I had a few minutes to talk to Dr. Yakes before going under and told him I couldn't take much more of this and could he give me a ball park figure of how much longer?! Told him people seem to doubt this will ever be over with and he said, "It only matters what you and I think and know is happening", or something to that effect. He says maybe another couple years of procedures. Not too bad - I just want the bleeding controlled! That's probably why he hit me with 49 cc's of alcohol! YIKES! The most he had ever used before was like 28 or so; I am surprised I'm not more swollen or having severe pain! Whew!

Next thing I knew, I was back in my hospital room and Mark was bringing me some juice! Had nurse Laura and then Judy - both are great! Respiratory techs came by to check on my trache and supplies, so we had some traffic going. Actually, the evening I was admitted I had an internal medicine specialist and an Infectious Disease doctor come by. Wanted to check on the pseudomonous infection and decided to keep me on antibiotics for another 6 weeks! That's getting old, especially for nurse Mark that gets up an hour early to take one of the IV meds out of the fridge so it can be room temperature when he plugs me in before we get dressed for work!

Our neighbor Shauna took care of our babies while we were gone! On our flight home, a lady with her furry child sat next to me on the plane! She was a good traveler, very well behaved! Saw another passenger w/his Westie - had to go over and say hello! We miss Hanz and Bella so much while we are gone - but they enjoyed playing w/our next door neighbors dogs, Kaleb and Kolby in their fenced in back yard! Here's a photo of Mark and Hanz relaxing on the couch!

Right before I left on this trip, the Fossums were getting home from a week away to spend time with Greg's side of the family! Celia said their hotel was right across the street from the Mall of America and she brought back this perfect gift for us! It says, "all dogs are pets - Brussels Griffons are family"! Thought I would include a current photo of the beautiful Shalon Whitgob, former avm-er! She is waiting for the all clear 6 month period before reconstructive surgery follows after having an avm!

I'm still trying to get my bearings after this trip. Can't help but be wary of having a bleed - so many meals have been interupted as I start eating and then realize blood is dripping down my chin. I feel pretty good right now, trying not to take too many steroids, don't like the side effects. I plan to get back to work on Monday and keep on this journey until we beat it!

Take care y'all - as always, we thank you for your love, prayer and support!

Saturday, August 4, 2012

Hi Everyone! I've missed you! I have not been feeling my best and have been wanting to write for a while now! Sorry it's taken me this long to get to it! For the first time since I've started blogging, I actually wrote out what I wanted to say on a legal pad in pencil - 6 pages worth! I just did not have the will and strength to get up off the couch and get to the computer! See photo of Hanz and I doing our favorite thing - vegging on the couch watching TV! Did ya'll know that there is a lady in New Zealand that reads my blog?! Yikes! Wonder if she's seen any Hobbits in her neck of the woods! (Heard the movie THE HOBBIT will be in three parts - cool!) She has a beautiful blog, full of photos of her quilting, gardening and equestrian hobbies!! Check out Poppies and Daisies!

I thought we had the bleeding under control after having been back two weeks from my last embolization, but started bleeding from inside my mouth Thurs. morning @ work. It was just a trickle of blood coming down my chin, so I went to the bathroom to rinse out my mouth . Later that morning I sneezed and started bleeding again. Went home during lunch to brush my teeth and brought that and toothpaste back with me. Soon as Nurses on Wheels came by to give me my mid day IV antibiotic (see photo of cutie RN Robert- see Breaking Dawn wedding poster behind him in my cubicle!) I left work and took Friday off! Unfortunately I bled during Thursday dinner, then @ 4am and then mid morning Friday. Those last 3 bleeds weren't horrible, but not slight either. So tired of all this!

The one good thing is that @ least my wound care visits are down to once a week instead of 3 times a week like before! The last 2 days I've had a fever and decided to go see my Primary Care Physician. He gave me the results of the CT Scan that had been done in CO. The pseudomonous (sp?) infection I have has gone down to the bone. UGH! He hopes the very strong IV antibiotic that I have to have 3 times a day for 6 weeks will kill that infection. The doctor said that antibiotic is what is causing my side effects - weakness, wanting to jump out of my skin, night sweats, irritability, freezing during the day ... are we having fun yet?

Let's get back to CO - Dr. Yakes used 13 cc's of alcohol around my mouth area. I only had to be on steroids 2 weeks for the swelling, so that's pretty good! I can't say enough about the staff @ Swedish! One of the nurses saw that I had the companion book to Breaking Dawn 1 and she is a fellow Twi-Hard! I told her I only have the one sountrack from the first movie, since my budget hasn't allowed for any more than that. She generously made me a copy of her cd for the soundtrack to the second Twilight Saga movie, New Moon! I love it and have played it every day @ work since being back! Then she tells me there is a new tech working there that she feels resembles Taylor Lautner (Jacob) from the Twilight movies - so she went off to get him to come see me! His name is Alex and he was a really good sport! You can't tell from the photo, but his hair is spikey and check out his cute dimple! Celia and I are Team Edward though.

Yes I know Kristen Stewart and Rob Pattinson broke up - darn it all, I wanted them married in real life! That's ok, they'll live forever as Bella and Edward in the Twilight movies! What can I say, I'm a romantic! The Olympics have been a great distraction from that disappointment in my favorite celebrities - as far as I'm concerned, the best part of the Olympics has been David Beckham! He looks so great in a suit and tie! Mark says, "I'm a straight guy and I even think the guy is good looking"! (See photo in case you're not sure who David Beckham is). My sister Celia and I agreed that he should be playing 007! The other great thing about the Olympics has been seeing the Royals! I'm a Royal watcher - in fact, right now one of my friends/co-workers is in London and I asked if she would bring me something Royal or something Olympian. I've since changed my mind and want her to bring me David Beckham! I can dream can't I! Mark and I are both fans of Michael Phelps - heard tickets to see him swim were like $700 and scalpers were selling them for $10,000! Can you imagine? I've always loved the Olympics and can remember when Bruce Jenner won the decathalon and loved the mens gymnastics team that included Peter Vidmar, Bart Conner (now married to gymnast Nadia) Tim Daggett (doing gymnastics commentating) and Mitch Gaylord! Course as kids we saw Olga Korbut and kept up with Mary Lou Retton, Kerri Strugg, etc.

I want to go back a bit and say something about some of the people that help me with my medical needs. The nurses @ Swedish really love their patients. During this last trip I had been a little upset and the nurse hugged me and said, "you're in my heart"! Some have come by just to say hello because they saw my name on the schedule.

The Nurses on Wheels are terrific - super nice and very professional! I have dealt with Robert, Alma(sitting @ desk), Carlie and Melissa! Alma is the best @ changing the needle on my mediport. Robert is a doll and I love talking to him! Carlie is now a neighbor and a real sweethart and I haven't seen too much of Melissa, but she is very good as well!

My wound care group is awesome - there are mornings I am litterally dragging myself for my appt. w/them before going to work and they always make me feel better! One tech knew about my babies Hanz and Bella and lent me a book she had about a dog. Oh! I just finished reading a book called The Dog That Talked to God by Jim Kraus - I enjoyed it alot! Speaking of dogs, mine have already been by a couple of times to tell me it's time to get off the computer! Mark is in Rockport helping his brother Jim w/something, so he's not here to entertain them so I can write! I'm going to take a break and hope I make it back soon!

Ok, Mark is back and making dinner and the kids are happy that their daddy is home, so I have a few minutes to write some more! The next book I had started reading is Jeanne Coopers "Not Young, But Still Restless". She has played the part of Katherine Chancellor on my favorite Soap, The Young and the Restless! I started watching that when I was 12!

Remember I had just introduced you to Chris Jenky in Respirtory @ Swedish on my last blog entry? Found out he and his wife moved out of state where she was from. Darn, I really enjoyed his easy going manner and seemed to really know his stuff. Oh well. During this past visit, I heard about another of Dr. Yakes patients - a girl that has a large avm on her arm. Apparently so large, that she has to hold her arm over her head - I guess the blood flow would be too great if she held her arm down in a relaxed position. Can't imagine how difficult this would be for a child to go through, as it is hard enough for me as an adult! Dr. Yakes always tells me, "We're winning", and I want to say, "Ok, but WHEN"?

The day I was to be released from Swedish, I woke up to the news about the massacre in Aurora. That is the first community you see when you leave the CO Airport and Englewood is very close by where I was. I was glad to be leaving the area, but saddened to hear so much about the shooting on television once we were home.

Couldn't get through this horrible time of my life without my amazing husband Mark. Not only does he take care of my medical needs - he administers my IV Antibiotics twice a day - cooks all our meals and puts up with my weird cravings depending on my meds! If I'm on steroids, I am ravenous. There are times I'm on a particular antibiotic and I have no appetite at all - I can go all day w/only eating a baked potato or a bowl of broccoli and cheese. One of my favorite new things to eat all the time is sweet potato fries! This entire experience is extremely stressful for us as a married couple, and we tell newlyweds - when we said in sickness an in health, we had no idea what we were up against. Well, we had some idea, Mark had already nursed me through the doctors breaking my jaw bone to see if the avm was going that deep, resulting in having my mouth wired shut for 6 weeks. At that time though, I had not been able to find a doctor that really knew how to help me and we certainly didn't know how extensive the treatments would be! Some spouses leave the marriage - we have a running joke where Mark tells me, "You know I'm leaving you when this is all over". My response is, "Ok, let me tell Steve Perry from JOURNEY to wait for me"! :) Whenever Mark has come to the office to rescue me after a bleed, my female co-workers are always telling me, "Wow, he's so nice and so tall"! Mark just changed my trache out this morning - I could not survive this "curse" as my local doctor called it, without Mark - he is a saint to put up with me! Mark feeds, bathes and grooms Hanz and Bella - so all I have to do is love them! They are such great therapy for me - helps keep my mind off what I'm going through!

Our families continue to offer so much support! Especially my sister Celia and her husband Greg. My brother-in-law Jim and his wife Shelley that live in Rockport. We could not function with what we are going through without their help! Mom jumps in when she can to take me on a doctor appt. if I'm not feeling well, or taking us out for dinner to give Mark a break from the kitchen! When I stayed home Friday, Celia drove me to the doctor, to the pharmacy, to go get my phone battery that I forgot @ work, to Nurses on Wheels to get my needle changed and my IV dose - then Mom took over to keep me company in case I had a bleed until Mark got home from work. To all my BFF's - Dorinda, Felice, Patty, Sylvia and Jackie - thanks for understanding I can't always get things out in the mail on time (or at all) or go out for lunch & have fun. I know my in-laws have me on the prayer list at their church - I appreciate and really need all the prayers I know come my way from all of you! Thanks again for keeping in touch with me. I appreciate it more than you know!

Hugs!

Cyndi

I'm including some fun photos. The cute dog with the updo I saw on Facebook - I think it's someones Brussels. Someone had written a comment saying, "has she seen herself in the mirror"? The vampire cartoon is so cute - it is on the bulletin board in my brother-in-laws office - he's a dentist! Oh, I almost forgot, Celia likes to frequent a restaurant conventiently located across the street from Swedish called The Copper Pot, and this was the first time I got to go with her! The food is awesome - like home made!